Digital humanities small research project funding, January 2012
David A. Gerber, UB Distinguished Professor of History, Director UB Center for Disability Studies (2009- ).
Michael A. Rembis, Adjunct Assistant Professor, Department of History, Associate Director UB Center for Disability Studies (2010- ).
An Oral History of the West Seneca Development Center (1961-2011), West Seneca, New York
We seek grant money to pay a programmer to design the website that will become the digital hub of a multistage, multiyear oral history project that explores the "deinstitutionalization" of people living with physical and developmental disabilities and psychiatric labels in the late twentieth century. The digital web portal created with the grant money will be linked directly to the main website of the University at Buffalo Center for Disability Studies (UBCDS), and will serve as the primary point of reference for and entry to an interactive oral history exhibit and archive that will include an overview of the project and individual descriptions of its various stages (sub-topics), as well as manuscript collections, audio recordings, video recordings, digital images, and other primary documents gathered during research. The data will ultimately be scalable and searchable.
The importance and timeliness of this project is evidenced by the fact that the UBCDS recently received a grant in November, 2011 through the UB Civic Engagement and Public Policy Research Fellowship Program, 2011-2012 (Round 2), which will be used to fund a graduate research assistant and general non-web related administrative support for this oral history project.
We are currently filing an application with the university's Institutional Review Board (IRB) in order to gain approval for research with living human subjects. In the service of gaining approval, we are informing ourselves about research ethics in regard to oral history projects and web-based data bases.
What is the intellectual merit of the proposed activities?
In the first stage, the digital oral history project will be regionally based, but we intend this project to grow into a nationally and, in the more long-term future, through development of a Canadian perspective, internationally focused project. The first stage, which will be digitized and made available on the oral history project website, will encompass interviews with residents and family of residents, management, and employees directly involved over five decades in the West Seneca, New York Developmental Center, and with regional disability service professionals in the private sector, who worked with the state in the operation of the institution. The subject of these interviews will be the problem of deinstitutionalization, encompassing, from multiple perspectives, the goal -- and for some, the reality -- of life in the community, which for many individuals included transfer to group homes, or other forms of "supported" living, either in the family home or on their own. After years of a decline in its residential population, the final closing of West Seneca Developmental Center in the summer of 2011 represents the demise of a modern model of institutional care that had been faltering throughout the late twentieth century, because of both the costs involved in maintaining large facilities and the well-founded objections to removing people with physical and developmental disabilities and psychiatric labels from the community.
This is a timely moment to address this history. Public support at the state level through legislative appropriations is declining for disability service provision. Due to the ongoing fiscal crisis of the state, deinstitutionalization proceeds rapidly, but so, too, does the decline of public money available to assist in funding what was mostly offered to replace it, via a process sometimes referred to as transinstitutionalization: the smaller, community-based group homes and developmental centers that have provided an alternative to the large state institution.
This digital oral history project will not only uncover this often forgotten past, but it will also analyze it in ways that make it relevant to community members, students (at all levels), researchers, and scholars. Three months into interviewing, we will convene an advisory committee of UB faculty to offer criticism and suggestions based on analysis of the interviews we have done.
Grant money to finance major digitized oral history projects within the immediate past has been made available by: the National Endowment for the Humanities (Public Programs); the Ford Foundation, the Gannet Foundation, the General Mills Foundation; the Heinz Family Foundation; and the William and Flora Hewlett Foundation. The digital humanities small research grant will enable us to do the critical groundwork necessary to apply for a grant from these or other foundations. It will also allow us to continue to seek further counsel from UBŐs Michael Frisch, widely regarded as an international authority in the practice of oral history, and a leader in the creation of digitized oral history projects on the web. We have already consulted with Frisch in the planning of this project to this point in time.
Potential impact of proposed activities on digital humanities scholarship at UB and in general.
We intend to offer the research products from the oral history project on the newly created website as a foundation for supporting exploration and discussion of this often neglected past and uncovering the forgotten voices of disabled individuals and their families. Through its interactive website, this project will promote public discussion both of the creation of digital archives in the humanities, and of what comes next in disability service provision and disability activism. In addressing the latter issue, we are, in effect, speaking to the future of societal support for the full integration of people with disabilities into the community.
The anticipated work products of this project, which will be accessible through the newly created web portal, are (1) oral history transcripts, audio interviews, digital images and video footage that will contain machine readable indexing features to facilitate use in research (at all levels and in several different disciplines), publication, conference participation, and museum exhibit development. A collaboratively produced multimedia reference section, which will foster continued (and expanded) investigation and research will also be created and integrated into the website, further enhancing both its learning and its research potential.
How well do the proposed activities integrate with existing UB humanities research and projects, in particular the UB 2020 Cultures and Text Strategic Strength?
To the extent that the history of the West Seneca Developmental Center may be written using printed sources, our methodology is designed not to create an institutional history, but instead, through open-ended interviews, to reconstruct the qualitative lived experience, of the many individuals involved with the institution, including those individuals with disabilities and their families. Recovering these voices is a tremendous benefit to the study of different groups and cultures within the humanities, and in this case a group whose voice has been persistently neglected in both the humanities and the social sciences in the past Open-ended interviewing is guided by an agenda set as much by the interviewee as the interviewer. We will develop a roster of interviewees through several methods, including: soliciting participants via notices in the local press, including community newspapers, and electronic media; through suggestions from those we have already interviewed; and through individuals engaged in disability service provision agencies, such as People Inc., which has a close, cooperative relationship with UBCDS, and has worked closely with West Seneca in the placement of individuals in community housing. Care will be taken to protect identities where this is requested by individuals. In the case of interviews done with people with developmental disabilities, legal guardians or family members will be present throughout the interview.
Project personnel qualifications:
Michael Rembis and David Gerber will conduct interviews, and they will train advanced graduate students from the Center for Disability Studies Interdisciplinary Masters Program (approved July, 2011) and the UB History Department to do interviewing based on the open-ended model. A mechanism exists within both the Disability Studies and the History curriculum for providing students with course credit for work in public history. All student interviewers will be required to take the research ethics training course that is mandated by the UB IRB, and will be well-versed in open-ended interviewing and relevant issues growing out if institutionalization processes.
Both Gerber and Rembis have published extensively in the History of Disability. (CVs are available upon request.) Rembis has been directly involved with the subject of institutionalization in his recently published book, while Gerber's work on disabled American military veterans has used rehabilitative institutions in the analysis of blinded and of amputee war injured veterans. Gerber has done extensive oral history, using the open-ended model of interviewing, with blinded veterans of World War II and with the iconic figure of World War II disabled veterans, the bilateral hand amputee, Harold Russell. Neither topically or methodologically is this project a point of departure for either principal.